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By Mary Brintnall-Peterson, Ph.D

Caregiving changes who you are and can lead to stress as you care for the care receiver. Knowing yourself is the key to reducing stress caused by caregiving. Sounds easy—right? The reality is that it’s difficult to truly discover the “why” of our actions and feelings which cause stress.  This three-part article series is designed to use my personal experience as a caregiver and caregiver stress research to help caregivers explore the “why” of caregiver stress. The first article emphasizes how your identities contribute to creating caregiver stress. The second article discusses personal rules and how they guide our caregiving decisions. The final article discusses types of caregiver stress and resources that can help reduce stress.

When my 38-year-old single son was diagnosed with colon cancer, it was a no-brainer to become his primary caregiver. As his mother, I wanted to provide his care.  Providing care for my children is one of my mothering roles.  Our society expects mothers to care for their children regardless of their age. She is expected to do this notwithstanding everything else going on in her life. My work educating family caregivers for the past 30 years prepared me to expect stress as a caregiver. As a university professor, I helped caregivers understand caregiver stress and the emotions they experience while providing care.  I taught caregivers to understand that by taking on the caregiver role they were no longer only a spouse, child, parent, or another identity they had in relation to the care receiver.

Relationship Identity Between the Caregiver & Care-Receiver

In my case, I was my son’s mother but added the identity of the caregiver. Each of these identities had rules (guidelines and expectations) that would surface when making decisions about what I did or didn’t do as a caregiver. Being a mother and caregiver are only two of my identities. I‘m also a wife, daughter, sister, friend, and volunteer.

4 Facts About the Complexity of Identity Relationships

  1. Your identity with each person is unique because your relationships with each person (child, spouse, parent, etc.) are different.
  2. There are different roles in each relationship (colleague, parent, sister, wife/husband, etc.).
  3. Each role a person has comes with responsibilities (confidant, nurse, cook, friend, joint decision-maker, etc.).
  4. Each responsibility has tasks (shopping, bathing, listening, questioning, etc.).

Once the decision was made for me to move where my son lived and become his caregiver, I began integrating my caregiver identity with my other identities. I was like other caregivers and experienced stress but, being stressed is a way of life for caregivers. As caregivers we do what is needed and often don’t take the time to think about our own stress. We also don’t think about, or even recognize when our identities are in conflict. Experiencing conflict between identities is called identity discrepancy. It is common for caregivers but understanding the “why” of the conflict isn’t easily understood.

Understanding the “Why”

To understand identity discrepancy and the “why” of caregiver stress, we look at the rules for each identity. My mother and caregiver identities both have rules. These rules could be the same. At times, they are different and can conflict with each other. It is when they are in conflict that I experience caregiver identity discrepancy and stress. When I didn’t take time to explore the “why” of my stress, it came out as anger, frustration, resentment, and/or other feelings. When digging deeper into the “why” of my stress it became apparent I needed to accept that my caregiver identity came with new roles, responsibilities, and tasks. My new caregiver roles were being a nurse, financial manager, advocate, and more.

My nurse role had me overseeing my son’s medications, cleaning his wound, and helping with the medical equipment that he used. As his financial manager, I dealt with insurance and made sure bills were paid, Lastly, as an advocate, I secured the equipment he needed to shorten or postpone hospital visits and maintain his quality of life.  Each responsibility has tasks associated with it so that the responsibilities can be fulfilled. My caregiver roles, responsibilities, and tasks were becoming a part of who I was and were fitting in with my other identities of wife, mother, grandmother, volunteer, daughter, sister, etc.

When I became stressed while caring for my son, the first thing I did was to think about why was I stressed—was it the task I was doing or not doing that created my stress or was it how I felt about the task I was doing or not doing? Usually, I found it wasn’t the task but how I felt about the task that needed to be done. If my stress was from the task itself, I explored what it was about the task that made it stressful.  Maybe it was because I didn’t know how to do the task or had done it incorrectly. Maybe it took too long to do the task. Maybe the task had a bad odor or was just unpleasant. If it wasn’t the task itself, I knew it was associated with my feelings. I attempted to name my feeling—was it anger, resentment, guilt, confusion, or something else?

Next, I tried to determine the “why’ behind my feelings.  I had to keep in mind that my feelings were not right or wrong. My feelings were not good, or bad, they were just feelings. I looked upon them as the way my body was telling me something wasn’t right. Sometimes it was obvious why I experienced identity discrepancy and what rules, guidelines, or expectations I had challenged. In those instances, it was easy to reduce my stress.  Other times it was much more difficult to identify the “why” of my stress or which rules of my caregiver and mother identities were in conflict. To reduce my stress, I explored my rules, guidelines, and expectations in-depth. I had to decide which identity I was going to use in that situation—that of a caregiver or that of a mother.  Maybe this example will help: My son needed to gain weight and as a mother, I knew he needed to eat healthy foods. As a caregiver, the focus was on gaining weight no matter what. Which identity was I going to use? In this case, the answer was easy—he needed to gain weight desperately to continue treatment, so the caregiver identity won, and I found myself encouraging him to have milkshakes, ice cream, hamburgers, pizza, or anything else he wanted to eat. As a mother, I wouldn’t normally encourage him to eat these foods but as a caregiver gaining weight was the priority.  The conflict between my identities wasn’t always so obvious, especially those related to communication and our relationship.

To understand these more complex stress producers I had to look at the rules I acquired over my lifetime that guided my actions and feelings. My rules come from the global society, the various communities I am a part of or interact with, and my family.

To learn more about identity discrepancy and caregiver conflict, watch and listen as I share tips for providers working with families here.

References

Montgomery, R.J.V., & Kosloski, K. D. (2013). Pathways to a caregiver identity and implications for support services. In R. C. Talley & R. J. V. Montgomery (Eds.), Caregiver across the lifespan: Research, practice, policy pp.131-156). Springer Science + Business Medica. https://doi.org/10.1007/978-1-4613-5553-0_8(/doi/10.1007/978-1-4614-5553-0_8)

Montgomery, R.J.V., & Kosloski, K. D. (2009) Caregiving as a process of changing identity: Implications for caregiver support. Generations 33(1): 47-52.

Montgomery, R.J. V. & Kwak. J. (2008). Tailored Caregiver Assessment and Referral (TCARE) process: An evidence-based model for effectively supporting caregivers. American Journal of Nursing, 108. 54-57.

Rurka, M., & Suitor, J.J., Gilligam, M (2021). The caregiver identity in context: Consequences of identity threat from siblings. The Journal of Gerontology: Series B. (76)8, 1593-1604. http: doi.org/10.1093/geronb/gbaa099.

Savundranaygam, M. Y., & Mongtomery, R. J. (2010). Impact of role discrepancies on caregiver burden among spouses. Research on Aging, 32(2), 175-199. doi:10.1177/0164027509351473.